Professor Jackie Leach Scully1
1UNSW
Genomic knowledge is transforming our understanding of many conditions, including many forms of intellectual disability. While advocates claim this will lead to improved health outcomes, there is currently limited evidence to evaluate that claim, and little is known about how people with intellectual disability themselves experience genomic healthcare.
The GeneEQUAL project addresses this through qualitative research with people with intellectual disability, using inclusive research practices. Our findings have been incorporated into recommendations made to the NSW Ministry of Health. They raise serious ethical questions about how genomic services are currently provided for people with intellectual disability, including: (i) inequitable access; (ii) exclusion from decision making; (iii) lack of appropriate medical care or psychological support after diagnosis; (iv) inaccessible communications leading to anxiety and confusion; (v) inappropriate behaviour by healthcare practitioners.
Most of these failures can be addressed by changes in healthcare provision and improved education of healthcare professionals. Yet they also connect with more fundamental issues: societal and professional beliefs about the moral status of people with intellectual disability, their right to and capacity for self-determination, and the extent to which healthcare is willing to adapt its practices to connect with and include every patient.
Supported by the NSW Ministry of Health.
Biography:
Jackie Leach Scully is Professor of Bioethics and Director of the Disability Innovation Institute at UNSW. Her research has covered ethical issues in reproductive and genomic medicine, AI technologies, global health emergencies and disasters, and organ transplantation, generally with a focus on disability and using feminist approaches.